milee
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Post by milee on May 13, 2014 12:33:51 GMT -5
I might be concerned if you expect a large amount of growth from your son still, so much so that he might look disproportioned. I honestly don't know if that could be an issue. Let me know if you have any specific questions. I am sorry you have to deal with this. It has to be tough. Thanks. I may take you up on that later after we've been to the specialist.
This is the son that's always been very small for his age. We have been monitoring the slow growth, but weren't overly worried since both my DH and my father (so my son's father and his paternal grandfather) both were small for their age and grew much later. Both DH and dad were among the smallest in their class as kids and then did most of their growing after age 15 or 16, both hitting 6' around their first year of college. So we hoped that was what was happening with my son.
Starting about 9-10 months ago, he started a growth spurt, growing maybe 5" - 6" and that's when the S curve in his spine became very pronounced. He's now only about 5'2" and if that were all the more we thought he was grow, the doc said he could easily live with even this pronounced, 35 degree S curve. Unfortunately, we all think he's got at least another 6" of growing to do, and those growth times tend to aggravate a scoliosis curve.
Poor guy, he waits forever for his growth spurt and then when it starts gets hit by this. It is really going to suck for him. He's just feeling more self-confident about his physical stature, since he's not the shortest one any more.
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milee
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Post by milee on May 13, 2014 12:35:43 GMT -5
One of the kids in DD's K5 class has scoliosis. She's in some kind of brace for 18 hours a day. So during class, when her daily time is up, she goes into the washroom and takes it off. I never noticed it and we've done playdates with her. I can ask her mom for info on support groups and/or doctors if you'd like. But we're in Wisconsin. And I've got MissR's contact info, I can ask for an update on her granddaughter, if you'd like. Let me know. Thank you for the offer. I may take you up on that later.
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Angel!
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Post by Angel! on May 13, 2014 12:38:16 GMT -5
Angel.... Have they ever informed you that with the rods you have in your back, that you need to be careful with infection? Well...I kind of had an interesting experience with that. I left it out because my doctor who was much older at the time & done hundreds of these said he had never seen a reaction like I had, so I didn't want to scare milee with something that I think was a rare reaction that they couldn't explain. I don't recall ever being warned of infection, but 15 months later there was an infection of sorts. They couldn't explain it & the best they came up with is that my body literally decided that the rods werea foreign body & began attacking them. At no point did I have any pain, but I developed a large lump on my lower back. It was probably 2-3 inches in diameter & soft like there was fluid deep under the skin. So we went off to the doctor & they scheduled an emergency surgery for the next day. It wasn't painful or red like you would expect from an infection. They even tested the fluid after the surgery & it didn't test positive for any infection. My doctor said he had seen infections, but never one like this that happened over a year after the surgery. So I don't know if this is more common than was let on to me, since you asked the question. Have you heard of this before? You have to remember I was 13 for the first surgery & 14 for the second. Between my age & that this was over 20 years ago, I may have some details wrong.
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Angel!
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Post by Angel! on May 13, 2014 12:47:08 GMT -5
It is really going to suck for him. Yeah, it will suck. But, IMO, you are doing the right thing by having him get the surgery at some point. I hated the whole thing at the time, but it really was for the best. Maybe you will have more time for him to grow or maybe you can push it out for a bit beyond the 40 degrees. I saw a women not too long ago that clearly had scoliosis that was never treated. It made me so glad that I went through what I did.
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GRG a/k/a goldenrulegirl
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Post by GRG a/k/a goldenrulegirl on May 13, 2014 22:04:51 GMT -5
I have no personal experience or knowledge of scoliosis, but my DH has had some serious back surgeries over the past few years. What we learned in our search for care and treatment for DH, is that the top spinal surgery department in the country is at Johns Hopkin (based on rates of expected outcomes, complications, death, etc.). But, then we found the next best thing, a spine surgeon trained at Johns Hopkin working at nearby Brigham and Women's Hospital in Boston. DH's neurosurgeon might have been gifted anyway, but his training really increased our confidence in him. So much so, that we went back to him when DH ruptured his L5 disk again last year. (Crossing fingers that we get to skip the whole three-peat thing, LOL.).
HTH.
And here's hoping that you find the best care and treatment for your DS.
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whoisjohngalt
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Post by whoisjohngalt on May 13, 2014 22:37:15 GMT -5
I have no experience with this, but I am so so sorry your boy is dealing with this. It's tough enough to be his age.
Thankfully he has a really great mom by his side!
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Post by The Walk of the Penguin Mich on May 13, 2014 23:52:14 GMT -5
Angel.... Have they ever informed you that with the rods you have in your back, that you need to be careful with infection? Well...I kind of had an interesting experience with that. I left it out because my doctor who was much older at the time & done hundreds of these said he had never seen a reaction like I had, so I didn't want to scare milee with something that I think was a rare reaction that they couldn't explain. I don't recall ever being warned of infection, but 15 months later there was an infection of sorts. They couldn't explain it & the best they came up with is that my body literally decided that the rods werea foreign body & began attacking them. At no point did I have any pain, but I developed a large lump on my lower back. It was probably 2-3 inches in diameter & soft like there was fluid deep under the skin. So we went off to the doctor & they scheduled an emergency surgery for the next day. It wasn't painful or red like you would expect from an infection. They even tested the fluid after the surgery & it didn't test positive for any infection. My doctor said he had seen infections, but never one like this that happened over a year after the surgery. So I don't know if this is more common than was let on to me, since you asked the question. Have you heard of this before? You have to remember I was 13 for the first surgery & 14 for the second. Between my age & that this was over 20 years ago, I may have some details wrong. The reason I asked is that the rods, like my hips, are hunks of metal that are not vascularized. This means that microbes have essentially a free base to multiply if they ever reach the joint. I have to be extraordinarily concerned about infection such that I have to premedicate with antibiotics prior to certain procedures. It is worse now, because I already lost one set of hips to an infection, so it makes me even more susceptible to reinfection now. I was curious as to whether there are similar precautions you must follow.
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Deleted
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Post by Deleted on May 14, 2014 0:18:55 GMT -5
My nephew wasn't diagnosed until later in his life, now too late to do much about it. He's living out his life hooked on pain meds.
Wishing all the best for your boy, Milee.
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milee
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Post by milee on May 14, 2014 5:39:55 GMT -5
Thanks to everybody posting with good advice and good wishes. This will be OK.
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janee
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Post by janee on May 14, 2014 10:20:22 GMT -5
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milee
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Post by milee on May 14, 2014 11:03:07 GMT -5
Janee, thanks so much for coming out of lurking to post that - it's very helpful.
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Angel!
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Post by Angel! on May 14, 2014 11:05:36 GMT -5
Well...I kind of had an interesting experience with that. I left it out because my doctor who was much older at the time & done hundreds of these said he had never seen a reaction like I had, so I didn't want to scare milee with something that I think was a rare reaction that they couldn't explain. I don't recall ever being warned of infection, but 15 months later there was an infection of sorts. They couldn't explain it & the best they came up with is that my body literally decided that the rods werea foreign body & began attacking them. At no point did I have any pain, but I developed a large lump on my lower back. It was probably 2-3 inches in diameter & soft like there was fluid deep under the skin. So we went off to the doctor & they scheduled an emergency surgery for the next day. It wasn't painful or red like you would expect from an infection. They even tested the fluid after the surgery & it didn't test positive for any infection. My doctor said he had seen infections, but never one like this that happened over a year after the surgery. So I don't know if this is more common than was let on to me, since you asked the question. Have you heard of this before? You have to remember I was 13 for the first surgery & 14 for the second. Between my age & that this was over 20 years ago, I may have some details wrong. The reason I asked is that the rods, like my hips, are hunks of metal that are not vascularized. This means that microbes have essentially a free base to multiply if they ever reach the joint. I have to be extraordinarily concerned about infection such that I have to premedicate with antibiotics prior to certain procedures. It is worse now, because I already lost one set of hips to an infection, so it makes me even more susceptible to reinfection now. I was curious as to whether there are similar precautions you must follow. Now that you mention it, I do remember something about taking antibiotics when going to the dentist. But, since I had the rods taken out, I haven't had to worry about those things.
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pinkbow832
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Post by pinkbow832 on May 14, 2014 11:07:55 GMT -5
I have scoliosis and have gone through various treatments to help with it for about 10 years- I'm 29. It's critical that you're doing things now instead of waiting, since left untreated it will only get worse. It sounds like you have a good plan, but I would recommend getting at least 2 opinions. I had a test in school and they said it looked like I was developing scoliosis, but nothing was ever done. Now I'm an adult and dealing with back pain, which could have avoided if it was more closely monitored and dealt with early on.
One thing that I have noticed really helps is strengthening the muscles in my core and upper back. I've gone through 2 rounds of PT and chiropractic care in the last 2 years, but started lifting weights and building muscle a few months ago. This has helped more than anything, but that's also because I've never been particularly strong or muscular- I'm rather petite and don't have much upper body strength. I would advise talking to a dr. and getting a treatment plan before trying something like this though, just to make sure weaker muscles are developed with the correct exercises. Working with the chiropractor in conjunction with physical therapy helped, but I really needed some additional muscle development to really feel a change. Another thing to consider if your son is complaining about back pain at this stage is to look at his sleeping position. I can't sleep on my side anymore because it causes a lot of pain, so it's important to sleep on my back if I don't want to wake up sore.
Good luck and hopefully he'll find a treatment that works well for him without needing surgery!
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CarolinaKat
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Post by CarolinaKat on May 14, 2014 12:26:15 GMT -5
My cousin has/had scoliosis. She wore a brace through middle and high school. It did not help. She had an extreme case (two curves) that required surgery to correct. The month after her wedding (to a shorter man ) she had surgery to put in titanium rods. When she came out of surgery she was just over two inches taller! As far as I can tell, it hasn't interfered with her life much. She had to have a c-section with her kids (but I don't think your son will have to worry about that complication). She also sets off old school metal detectors, the new ones are better about it. She's never had problems with infections or anything.
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milee
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Post by milee on May 14, 2014 14:14:57 GMT -5
Within the next few days one of my friends who's a Harvard trained radiologist is going to review the x-rays and double check the measurements to make sure there's no miscalculation. Another friend who has incredible contacts in the physical therapy world (rehabbed major athletes knows many of the top ortho docs) is putting out inquiries to find PT with the best reputation. Another friend who's an orthopedic surgeon has given me a recommendation for - if we do need to go that route - what he considers to be the best pediatric spinal surgeon for scoliosis in the country. And other friends are offering support and love. It's good.
Meantime, I'm spending way too much time on Google and that's not good. Especially until we get more information. I know just enough about what the first doc thinks is the DX to be dangerous and search for key words but not enough to have some other details. And there are some horror stories out there. That's tough to read.
Meantime, my son is blissfully unaware. Went off smiley, happy to school. Dressed in a suit because he's doing some sort of presentation. Feeling on top of the world and looking forward to summer and then starting high school. As much as I know we need to get him in to the specialist just as soon as the specialist has an opening, part of me just wants to keep him happy and unaware for just a little bit longer.
In case I didn't mention it before (ha, ha - we all know this is one of my catchphrases) - parenting sucks.
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